Meniere's
Posted , 7 users are following.
Hi iv had MD for over 10 yrs and over this time it's has gone from bad to worse i can no longer go out on my own as i have had attacks where i have fall down esscelators and zebra crossings we have had to be rehoused to a bungalow because i kept falling down the stairs and because if this iv bamaged my back iv now been diagnosed with cronic pain disorder in the last couple of years iv had the steroid injection into my left ear to help with my MD it helps for a little while with the bad drop attacks i get about 3 months rest bite but it doesn't help with the day to day wobbles at the moment i am taking Betahistine , Cinnarizine for the vomiting and Buccastem for when its really bad and Zonizamide for the migraine head aches i have been told by ESA that i am fit for work and been turned down for PIP they have had letters from both my consultants and GP i have been to welfare wrights and they have resubmitted both my forms just waiting to hear back
0 likes, 10 replies
Willow2711 catherine81401
Posted
Hi
Having drop attacks must be so distressing for you. I haven't had drop attacks but as well as MD I have epilepsy, and polyarthritis which also impacts on my mental heath and I now receive ESA and standard rate for PIP but it was a long process to get to that point. I think ESA and PIP often have a starting point of offering nothing on the basis that some people, usually those without any support, are too unwell to challenge any decision. Its good that you have sought support and advice from welfare rights because having disability payments can open doors to other services such as mobility schemes and disabled travel passes etc. I think from what ive read elsewhere that people working in the benefits service dont understand the impact of MD on your life ( they are the same about epilepsy with some thinking if you have epilepsy you also must have a learning disability). I hope that you get the right outcome for you and I would be interested in how things go for you.
catherine81401 Willow2711
Posted
Thank you for yr reply around the same time that i was dignosed with MD i lost my mum this as affected my mental state so much so that iv tried to take my life a few occasions i am getting help with that but i'm finding things very hard to deal with this horrible illness as taken away my independance i feel such a burden to my husband and kids i thought it would easier for them if i was'nt hear
tanney catherine81401
Posted
what dose and how frequently are you taking betahistine?
Are you taking a sedative such as Ativan? Have you been seen by a neurotologist (inner ear specialist)?
catherine81401 tanney
Posted
i take 32mg of betahistine 3 times a day and 15mg of cinnarizine 3 times day for the violent sickness iv also been prescribed 45mg of mertazapin and 200mg of lamotrigine for the depression and 25mg metrofen patches for the cronic pain disorder
tanney catherine81401
Posted
I'm amazed that the high dose of betahistine is ineffective. I think the other meds you describe are not sedatives. It might be worth trying Ativan (lorazapam)....it works for me by calming the inner ear. You did not mention if you have seen a neurotologist? If not, please seriously consider doing that. They may have other options for you such as gentamicin injections that almost certainly will end your vertigo. This is a good option once all non surgical procedures have been tried. There are side effects to gentamicin injections which your doctor will discuss with you but the procedure is extreemly effective in eliminating vertigo. If you want more info on this (I've had it done) let me know and I'll send a personal message to you.
catherine81401
Posted
i'm under 2 different consultants for my MD iv ad the steriod injections i ad a course of 3 injections last year just waiting for new appointment to come through
tanney catherine81401
Posted
just for clarification....steroid injections are NOT gentamicin injections. Gentamicin is an antibiotic that is injected into the ear in a similar fashion to steroids. Gentamicin destroys the disfunctional balance nerve in the MD ear. Once destroyed the nerve can no longer send incorrect signals to the brain....it's these incorrect signals that causes vertigo. This type of injection has possible serious side effects that need to be discussed with your doctor. Nevertheless, it's an extreemly effective procedure that eliminates vertigo in about 85% of patients that have the procedure. I had this done about 40 years ago when it was a relatively new procedure to treat MD. My vertigo diappeared completely within a couple of weeks and it has never returned....over 40 years!
Good luck!!
catherine81401 tanney
Posted
thank you for your reply my consultant as spoke about Gentamicin as a last resort, hes reluctant to go down that rout because of the possibility of it making me perminently deaf and he says that my MD could go to my right ear so hes looking at other things at the moment
Dizzydaddy catherine81401
Posted
Hi,
I've had MD for 15 yrs and like you it has only gotten worse and now have in both ears. I've done the steroid injections and am now on a calcium blocker. last Spring I started seeing an upper cervical chiropractor and my vertigo spells have dropped considerably. Google upper cervical Menieres and you will see some research that supports this treatment.
Good luck!
catherine81401 Dizzydaddy
Posted
thank u i will look into this im willing to give anything a try